Inspired by Margot Vaughan, a Mastercard senior vice president who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2016, the #sALSaForaCure campaign will support international ALS research led by Massachusetts General Hospital’s Department of Neurology. The campaign began internally at the payment technology company’s headquarters with a salsa dancing party in January. It will go public internationally in the spring.

One of Their Own

In the fall of 2015, Margot Vaughan began having trouble moving her hands. She sought medical advice but got conflicting diagnoses.

A dynamic, high-energy person, Margot has worked with Mastercard for 23 years. A die-hard fan of the New England Patriots, Margot once charged across the field before the start of a game and convinced the coaches to let her whole family watch quarterback Tom Brady emerge from the tunnel.

With characteristic energy, Margot began searching the globe for top medical experts who could diagnose and treat her condition.

“She is such fighter and a go-getter,” Caroline Vaughan says of her mother.

ALS causes progressive deterioration of the nerve cells in the brain and spinal cord that control body movement. About 30,000 people are living with ALS in the United States as are an estimated 450,000 people worldwide.

For Margot and her family, the diagnosis was devastating. “It was such a shock,” Caroline recalls. The family jumped into action raising funds for research to tackle ALS, the disease that was the focus of the Ice Bucket Challenge that swept the nation in 2014. Margot’s daughter Kirsten ran the New York Marathon as a fundraiser and husband Thomas organized a fundraising walk. Even more, Thomas assumed the important role of caring for Margot at home. “My father is a wonderful caretaker,” Caroline says with admiration.

With Dr. Cudkowicz’s guidance, Margot took advantage of the latest treatments.

“We make it possible for patients to participate in any trial going on in the world,” says Dr. Cudkowicz. Mass General has one of the most active ALS clinical research centers, leading and collaborating on scores of novel ALS research projects.

Accelerating ALS Research

Sitting back and doing nothing was not an option for Margot’s family—or her Mastercard family.

Caroline, who also works at Mastercard in the marketing department, is organizing sALSa For a Cure with colleagues. The sALSa For a Cure fundraising effort is intended to accelerate development of ALS therapies.

“We have a lot of great ideas for stopping this illness,” Dr. Cudkowicz says, “but they need to be tested in people. The barrier is funding, not ideas.” To rapidly translate ideas into clinical trials, Mass General researchers can tap into the existing ALS trial network. “We want to keep partnering with others so great treatment ideas won’t languish on a shelf or in someone’s head, but will go forward to people to get clear, fast answers,” Dr. Cudkowicz says.

The idea for the sALSa For a Cure campaign was a group effort resulting from discussions at Mastercard headquarters in Purchase, New York late last summer after Margot’s health began to deteriorate, Caroline says.

Bringing Joy to the Conversation

Key to the effort is Kevin Stanton, Mastercard chief services officer, who enthusiastically embraced the idea for the social media fundraising campaign and serves as the executive sponsor of the initiative.

“My mom is so proud that she has this community backing her.”

“Margot is one of the most fun-loving and yet hard-driving people I know, and we’re taking a page out of her book with sALSa For a Cure. The thing I love most about this campaign, besides the excuse to dance, is that we’re bringing joy to the conversation about this terrible disease while making a difference,” Kevin says. “We are dedicated to doing our part to raise money for research to help Margot and all of the other people out there affected by ALS.”

Caroline says that while her mother is growing physically weaker, she retains her intelligence and drive and her spirit remains strong. “My mom is so proud that she has this community backing her,” Caroline says. “It makes her fight harder to hear about all the people who are working on this.”